PatientsLikeMe

PatientsLikeMe is a site that lets patients with a wide range of conditions record their symptoms, medications (and adverse effects), and disease progression and talk to other people with the same condition and share information. Membership is free and is also open to physicians, though you have to promise not to survey or recruit patients through the service.

I think this is a fascinating tool and, from the researcher standpoint, one that provides a novel way to gather information on disease progression, symptom prevalence, treatment effectiveness, and drug adverse effects. From a patient standpoint, I think it would be good to talk others, see what has worked for them and what hasn't, and develop a sense of community.

So here is the wrinkle. PatientsLikeMe is very open that they sell their data, it is how they get funded. So before using it or recommending it, I would make sure to read the privacy policy and understand what they do with the data.